When I first speak with artist and activist Jenni-Juulia Wallinheimo-Heimonen in her native Finland, she has a small admission to make: “When we set this up, I forgot it was my wedding anniversary!” When I suggest we reschedule, she says no, that she and her husband have already spent a lovely day together. Wallinheimo-Heimonen is a busy mother of two, with an active career as a textile artist, who also makes edgy art videos, gives provocative public talks, and works with disability organizations. She’s a powerful change agent who uses her art and activism to dismantle old paradigms about people with disabilities and to spotlight taboo subjects, such as the high rate of abuse women with disabilities face. She also has osteogenesis imperfecta (OI), commonly known as brittle bone disease, a congenital bone disorder characterized by fragile bones that are prone to fracture. Although Finland is revered as a “Nordic paradise” for its stellar educational system and universal health care coverage among other attributes, Walinheimo-Heimonen speaks openly about its rigid, one-size-fits-all approach to people with disabilities. During our conversation, she’s articulate and impassioned, speaking rapidly at times, about her creative process, about how assistive technology should be more personalized, and about her efforts to change the attitudes that keep people with disabilities from full inclusion.

Paula Fitzgerald: You’re a textile artist and an activist. How do these two intersect?

Jenni-Juulia Wallinheimo-Heimonen: In Finland I use the term “political disability art”, but I’m not at all political in the traditional way. My art does not represent any political party or political trend; it’s about human rights. Nowadays, I’m also making videos and giving performative speeches and doing more conceptual art. I like to create new terms in the disability field. In small countries, such as Finland, it’s quite easy to get new terms accepted among people with disabilities. I work with several disability organizations, so I have many opportunities to share these new terms. Happily, I’ve noticed that people use them. It’s kind of an art game.

Fitzgerald: You say it’s easy to get people with disabilities in Finland to adopt new vocabulary. Why? And what are some of the new terms you’ve introduced?

Wallinheimo-Heimonen: I think it’s largely because of the size of our country. We have only five million people, and there are several large disability associations, and most people with a disability belong to at least one of them. The field of persons with disabilities is quite small here. We all know each other. We know who’s active in the organizations. When you give speeches, other people adopt your words, your sentences, and so on. I also think this is a way to do the art, because it’s very important what kind of words you use when you talk about disability.

And this is the tragedy, that we are speaking English now, because I cannot play with words because my English is not that strong. But here, I’m always trying to find the positive words, the ones that demonstrate our potential, and not talking about long-term patient care, or this kind of traditional medical disability talk.

Fitzgerald: I know translation is tricky, but can you give me a few examples of terms you’ve created?

Wallinheimo-Heimonen: My best-known term is “kiltteysrasismi,” which translates into “kindness-discrimination”. I wrote about it in 2005, and I’ve recently seen it used even in some mainstream blogs and columns. With the term, I mean situations in which we are not given honest critical reviews because of our disability. Or, we are protected against alleged failure or embarrassment without getting a chance to try. Situations in which kind people, with protection in mind, actually deny us the opportunities to grow and develop. Kindness-discrimination makes it difficult for us to move forward in life or to work because we can’t trust the feedback we get. People think they are doing us a favor with “kindness-discrimination”, but it is a form of subjucation and pity wrapped in smiles and false praise. My latest term is “onion-explanations.” These are answers we get when we demand our rights. We get several layers of explanations, which are often weepy and strange and do not tell the real reasons for denying us something.

Fitzgerald: Those are insightful and right on! So how long have you been an artist?

Wallinheimo-Heimonen: I was born into an artistic family. My mother was a graphic designer, so I was making art even before studying art. I graduated with a degree in textile art in 2002 from Helsinki University of Industrial Arts, but I started almost immediately creating conceptual art. I was lucky in that 2003 was the European Year of Persons with Disabilities, so the European Union was supporting many projects by persons with disabilities from all around Europe. And in Finland we had a big project, which was a big gallery in the city center. We were given five-minutes on the morning news shows. We got a lot of attention from the public and the media, and the art world became more interested in what we were doing. I had just graduated, so I jumped into this field. It was kind of pioneering work back then, even though it was only 10 years ago.

Fitzgerald: It sounds like the timing was just right for what you were doing.

Wallinheimo-Heimonen: Exactly. But when I read about what is happening in Great Britain or the US, you all started this in the ‘60s and ‘70s, so we’re coming a bit late to the disability art world in Finland.

Fitzgerald: We still have a ways to go!

Wallinheimo-Heimonen: (laughs)

Fitzgerald: Tell me more about your family. Did you grow up in Helsinki?

Wallinheimo-Heimonen: Yes, I grew up in Helsinki. I now live 25 kilometers away. My mother was young, just 19, when I was born. My parents worked all the time, so we had a happy family life. Since my mom was a graphic designer, I would play under the light table in the ‘70s and ‘80s as she worked on a layout for a newspaper. I had all the materials and all kinds of colors to play with. That was really how I started. And then came computers, and all this paper and all that stuff was taken away, but I was also much older by then. My father was a car mechanic; he would bring us really nice stuff to play with, too. (laughs)

Fitzgerald: Did both of your parents have brittle
bone disease?

Wallinheimo-Heimonen: My mother has brittle bone disease, and she’s a second-generation. Her father had it, because we have some color photographs of him where you can see the blue sclerae in his eyes, and we also have his letters from all kinds of health spas—the places where you go to improve your health. They are really funny, because he wasn’t diagnosed, he was just sent there to get fresh air and to get stronger. He would write to his parents, “I’m doing well, but my leg still hurts a bit.” He was the first mutation, and then my grandfather had two kids, my mom and her brother. My mom inherited it, and then after my mom, both my sister and I have it. My sister has two children with OI, and both of my children have inherited it. The majority of my family—seven out of eight—were born with the condition.

Fitzgerald: It sounds like everyone lives a very full and active life, yes?

Wallinheimo-Heimonen: (laughs) Exactly, yes! My sister is a nurse, and my mother is still working. It has never stopped us from doing anything. We have been thinking we have some sort of OI spirit, which helps us to persevere. I didn’t grow up with a model in which disability was about limitations. My mom told us, “Clean your room,” and we did. That was the normal thing to do. I wasn’t protected or told to avoid things because of my condition.

Fitzgerald: So you did everything other kids did,
participating in school activities?

Wallinheimo-Heimonen: The only thing I didn’t do was ice skate, which is popular here in the schools during wintertime, but I did everything else. I went swimming when others went ice skating. I cannot imagine doing anything different. I didn’t need to use any assistive equipment. My condition didn’t show so easily, only the teachers knew, and my schoolmates were told only to be careful with me and not to push. I love to do crafts and small things with my hands, so I wasn’t very active. My sister had many more fractures than I did because she was the wild girl, and I was the calm one, sitting, sewing and painting. So I didn’t break limbs so much as a child. But I think I’m now paying the price for that, because when you don’t use your body so much, now that I’m getting older, I have broken some bones—stress fractures on the small part of my spine. This happens when you don’t exercise enough. But my sister is much stronger now, because she was always taking better care of herself through therapy and gymnastics and these types of things. I never did. But I wasn’t treated any differently.

Fitzgerald: Your mother sounds very smart in how she handled the condition with you and your sister.

Wallinheimo-Heimonen: She didn’t have a choice. I also think that she was young and disabled, and she and my father didn’t have much money, so we had to keep life going. Smart, yes, but it was also survival techniques.

Fitzgerald: You gave a thought-provoking talk on the topic of ugly for CreativeMornings, in which you
gradually removed all your beauty enhancements—your fake eyelashes, hair extensions, etc. Why this topic and approach?

Wallinheimo-Heimonen: The topic was actually given to me. All around the world, the topic of ugly was the theme for January. I was a bit surprised that they wanted a disability activist to talk about ugly, because I usually don’t combine ugly and disability, so it was a really difficult topic. That’s why I was trying to play with norms. Nowadays, so-called normality may be abnormal, like the beauty industry and wearing fake eyelashes, which I take off during my talk and used to show how difficult it is to be a person with a disability in this world because of these beauty ideals, where all the time you’re supposed to try to look better. And I was playing this game, too, when I was younger. I believed that I should all the time be doing something to make myself look better.

Fitzgerald: How did you get past the body image issues that so many women deal with?

Wallinheimo-Heimonen: I was really thinking hard about this issue just this morning. It’s funny that you’re asking, because I was joking with my husband that nine years ago I almost cancelled our blind date, because I didn’t like blind dates. I didn’t have anything to wear, and I thought he’s not going to accept me anyway; I don’t look pretty enough and all that. And then I put on a corset from China, to make my pants fit better, which made me feel very uncomfortable during the date, and then this morning I thought, “Oh, my God, nine years later and I’m going through the same thing, talking about ugly and showing the public all these kinds of fake things.”

Fitzgerald: This refusal to wear the mask and to the play the beauty game—what’s this about for you personally?

Wallinheimo-Heimonen: I don’t know if it’s motherhood or age. It’s as if I don’t want to play this game if I’m talking about disability issues. I cannot play the beauty ideals game where the beauty belongs only to people with perfect health or perfect looks. I don’t know how it happened or what happened to me. I was accepting of myself, maybe, but that sounds so cliché. I just realized that nothing bad happens if you do your grocery shopping just as you are in the morning. I just decided that I can do it, because as a person with a disability I have done even worse things, if I think about the medical procedures and all these kinds of really ugly things. Why do we think that it’s ugly to wash away our makeup?

I was also playing with my own courage. I can do it, and nothing bad happens. Actually, only good things happened. (laughs)

Fitzgerald: Do you think having a disability made you less inhibited?

Wallinheimo-Heimonen: Kind of, yeah.

Fitzgerald: In the talk, you share that both of your children inherited brittle bone disease and that you were secretly happy about that. Could you elaborate?

Wallinheimo-Heimonen: I was hoping that maybe if we had kids, I would know what to do if they had brittle bones. I know how to read and play and draw and work with computers—all the arts and crafts things. This feels safe to me. And a kid with normal bones feels a bit unsafe. Even if they don’t break bones. This is really difficult to explain, but I was talking with a mother who is blind, as is her husband, and she also said that maybe it would be easier to have a child who is blind rather than one who is fully sighted, because then you would share the same world.

Fitzgerald: That makes sense. It’s the world that you know, so you don’t have to worry about them hurting themselves or doing something dangerous.

Wallinheimo-Heimonen: There are people who’ve asked me, does that mean I want my kids to suffer? But I know that people with OI don’t suffer all the time. It hurts when you get a fracture, of course, but there is good medication. The casts are lighter and more flexible than when I was a kid. Based on all the research, these kids study, live a normal life, and marry and have children. It is not the end of the world.

Just three weeks ago my son broke his leg for the first time, and today we went to the children’s clinic in the morning, but they didn’t take the cast off because it hadn’t healed properly. He was disappointed. Okay, so we got some ice cream, and we had quite a good day around the city and all this celebration. I don’t think he’s suffering. He could have a much worse condition than brittle bones. I would think differently if it were something more serious. Brittle bone disease is not. But if you look at the Internet, you might think that this is the most terrible thing in the world, that you break your bones all the time. Yeah, you might, but you still live. (laughs)

Fitzgerald: You talked about an “ugly experience” you had with your doctor. You told him that you didn’t want more children, and he suggested that if you wanted another child, he could screen an egg without the genetic mutation. Does this make you nervous about bioethics, the ability to screen out undesirable characteristics?

Wallinheimo-Heimonen: It makes me nervous because, for example, we have fewer and fewer people with Down’s syndrome, which is easy to screen. Also, OI, the most severe types, which are Types III and IV, are almost disappearing because the characteristics are easy to see in an ultrasound. This is really tough. I’m not against prenatal screening, but I think it’s not fair that when doctors find something “abnormal” or not right, they give you a huge list to read about this condition, which is only from a medical viewpoint, and they don’t tell you anything about life with that condition.

In Finland, we have this very light pressure to terminate these kinds of pregnancies. I find this very unfair, because I feel brittle bone disease is like a rare plant. I don’t think there is just one type of human being. We should have variations, and why are rare diseases not accepted as just variations, like eye color? Why is it something that we should get rid of? I think it’s important to have people with disabilities, because most able-bodied people will join us later in life, when it’s much more common to become disabled. Those of us born with a disability can give others courage and teach them about our culture. We can be very empowering to help them survive. But I think the world wants it the other way around, in order to save money, that we shouldn’t exist, and that it’s acceptable only if you become disabled later in life....

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